When the AIDS activist movement ACT UP was formed in New York in 1987, 50 per cent of Americans wanted people with AIDS quarantined, while 15 per cent favoured tattoos. An interview with Sarah Schulman on her film United In Anger: A History of ACT UP.

A clip from the documentary United In Anger: A History of ACT UP. Credit: Sarah Schulman and Jim Hubbard.

For Sarah Schulman, still being alive
is a responsibility. As a young journalist on a New York gay paper
when AIDS began, the vast human losses of the 1980s were experienced
as emotional trauma: “In the first five years of AIDS 40,000 people
died and the President never said the word 'AIDS'”, she tells me.

This raises an obvious question. If so
many AIDS activists died young, who else will recount their history?

Schulman's recent documentary United In
Anger: A History of ACT UP – directed by Jim Hubbard – situates
the AIDS activist movement ACT UP within its rightful past, revealing
its political force again to the present. Immediately the immensity
of the task is clear. Footage from a primetime news report reveals
that 50 per cent of Americans at the time wanted people with AIDS (PWA) quarantined – while 15 per cent favoured tattoos.

Though doctors made the first
'official' AIDS diagnoses in 1981, it wasn't until 1987 that ACT UP,
or the 'AIDS coalition to unleash power', was formed in New York City
as an organized LGBTQ resistance. Contrasting against today's gay
assimilationist turn towards institutional acceptance, United In
Anger's collage of video footage shows the vitality of queer life at
a time when it was widely acceptable to describe HIV and AIDS as a
“gay cancer”.

The film is frequently tough to watch.
On-screen, speakers appear with their dates of birth next to their
dates of death. A bitter dichotomy emerges: the fire, community and
affinities of ACT UP's packed Monday night meetings are depicted
starkly against the police violence, governmental neglect and
medico-capitalist profiteering that contributed so greatly to the
rapid spread of HIV and AIDS. Though ACT UP still exists today, we
see its rawest moments, perhaps most emotive when a giant “Money
for AIDS not for war” sign is released above uproar in an
occupied Grand Central Station.

Mostly, United In Anger is an archive
of collective and individual bravery. Its creation is a
transformative act, a refusal to allow the suppression of knowledge
about radical politics.
It is about how it feels when politics are literally enacted on your
body and the bodies of your friends. Schulman and Hubbard refuse to
conform to established narratives: AIDS activists weren't just white
gay men, they were women of colour, homeless people, drug users,
lesbians. They make clear that broad coalitions enable radical
change.

Today over 35 million people live with
HIV or AIDS globally, and if you have access to healthcare, it is no
longer a death sentence. But how many cases would there be if
governments had responded with alacrity to the earliest reported
cases? United In Anger shows how important it is not just to
remember, but to refuse to stay silent.

ACT UP New York hold a "die-in", protesting lack of access to FDA-approved anti-AIDS drugs. Credit: still from United In Anger

RF: Why did you decide to make this
film?

SS: Well in 2001 I was driving in LA
and it was the 20th anniversary of AIDS. A radio station
had a programme and the announcer said: “At first America had
trouble with people with AIDS and then they came around.”

I almost crashed the car. I just
thought, this is what they're going to do now. They're going to do
this false naturalisation about how dominant culture was good and
just came to the right conclusion and all my dead friends, and
everything that they did - including the fact that they died - is
going to be erased.

So I talked to Jim Hubbard, who I've
been collaborating with since 1987. We decided that we would start
interviewing people from ACT UP so that there would be some raw
material that other people could use. We started the ACT UP oral
history project, and now we've been interviewing people for 13 years.
We collected 1000 hours of archival footage. It took ten years to
make this film.

RF: What were ACT UP's successes in
terms of forcing the American government or the Food and Drug
Administration [FDA] to act differently?

SS: The major success is that now there
are treatments. There were absolutely no treatments for HIV. And
nobody was trying to make any treatments because the disease was
affecting people whose lives didn't matter. So what you had was that
pharmaceutical companies who owned patents to failed cancer drugs
were trying to recycle those drugs to find a market for them, and AZT
[the first US government approved HIV treatment] was one of those drugs. But there was no
original research being done.

The initial impact of ACT UP was quite
large. Before Occupy and after ACT UP there were some massive
demonstrations in the US around when world leaders would come to the
States to discuss economic policy, and those demonstrations and also
all the anti-war demonstrations, and I think Occupy – were very
much influenced by ACT UP.

This bottom-up stuff, this inventing
your own strategies, inventing your own tactics, also your own visual
style as a way of marking your movement. Media oriented events, using
whatever technologies you have: so for ACT UP video was the new
technology, for Occupy it was the internet and Twitter and all those
other new technologies. All of that, I think, was influenced by ACT
UP.

RF: For the benefit of people who
won't necessarily have seen the whole film, could you describe the
action with the ashes at the White House?

SS: What happened in ACT UP is that at
the beginning, there were a lot of drugs that people managed to
trial, so there was a lot of hope that these drugs would be
available. Many of the actions used symbolic representations of
death. So there'd be “die-ins”. Or there'd be people lying on the
ground holding up headstones, this type of thing.

As the years went by all of these drugs
proved to be failures. So things became more and more desperate,
there was a period were there were no real treatments, and then more
and more people died.

And finally ACT UP moved from the
symbolic representation of death to the actual representation of
death. That manifested in a couple of ways. One was political
funerals, we would carry the person's body through the streets. For
example, in Rat Bohemia, I describe the funeral of Jon
Greenberg. We carried his body, we took it to Tompkins Square Park,
we opened the casket and there was a dead body in the public space.

In the film it shows you their dead
bodies being carried, everyone gathered around their bodies,
struggles with the police, the police trying to seize bodies, because
of course it's illegal to do that. It was interesting when we showed
the film in Palestine, because Palestinians also carry their dead
publicly through the street. It is a global sign of desperation to do
that.

David Wojnarowicz had written: “When
I die, throw my body on the steps of the FDA”. So people decided to
do an action at the White House. People have ashes of their fathers,
their boyfriends, their friends. They really came with their friends'
ashes and threw the ashes on the lawn of the White House. The
symbolic disappeared. Because things were so hard.

RF: So how were people who were ACT
UP members transformed themselves during their involvement?

SS: There were all different kinds of
people who joined ACT UP. Most of the women were already politically
active because they'd been trained in the feminist movement. There
were some men who came from the gay liberation movement, who also
were radicals and had experience. There were people who came from the
left. There were people who had been in the Black Panther party, but
they had been in the closet. There was a guy who'd been in the
Nicaraguan revolution, he had been in the closet as well. Jeff Gates.
He died.

But the vast majority were gay men who
had never been politicized. Some of them were everything from wall
street brokers, to party boys, to quiet men living at home... they
didn't know anything about politics.

What was interesting was that one of
the reasons that women did so well in ACT UP was necessity, because
these men were desparate to stay alive and the women had a lot of
spirit, so they listened to them. I've never seen gay men be so open
to listening to women in my life.

In our film, you see the women with
AIDS …. you see they're leaders, you see that it was women of
colour, you see it was former sex workers, former drug users,
homeless women, making speeches, leading demos, being dragged away,
being arrested. Because of thalidomide, women were excluded from
experimental drug trials.

But they're all dead now, all of those
people, so the fact that that was an activist movement is unknown.

When I showed our film to group of
women with HIV in Hartford, Connecticut, which is the poorest city
in the United States, the women in the room were all black and Latin,
they never knew that there was an activist movement of women like
themselves because they've been resocialised into being clients and
patients, instead of activists and advocates.

Getting that research and that history
is really crucial to the self-concept of people who want to make
change.

A giant “Money for AIDS
not for War” banner was released during a mass occupation at New York City’s
Grand Central Station. Credit: still from United In Anger.

RF: I'm interested in the idea of
ACT UP as a healthcare movement. Could you tell me about the move
from using the early slogan “drugs into bodies”, at the point
when ACT UP were campaigning for the FDA to release experimental AIDS
drugs more quickly, to being more broadly focused?

SS: Well actually it went the other
way. In the beginning Vito Russo, he was an important figure, he died
in 1990. And Marty Robinson, who also died. Jim Eigo, who's still
alive and his interview for the ACT UP oral history project is really
worth viewing. They initially wanted ACT UP to be a healthcare
movement. A movement that was going to get universal healthcare. Vito
Russo did not have health insurance, he died without health insurance
because he couldn't afford it.

Vito died, Marty died, and then this
group from Harvard came down to
New York and joined ACT UP. They brought the “drugs into bodies”
politics with them. They had a decontextualised politic. They didn't
come from feminism, they didn't come from the left.

So from that point on, if you trace the
history of ACT UP, you can see that many of the major demonstrations
produced all kinds of positive things in terms of research, but also
produced a seat at the table for the most dominant normative members
of ACT UP. So you end up with the right-wingers, who are from upper
class families, who went to fancy schools, they end up on all these
commissions, on these committees, and they become the insiders.

Whereas the other people, the women,
the people of colour, the working class people, whatever, they are
relegated to the outside strategy. So suddenly there's an
outside/inside strategy. Before that there was only an outside
strategy. And then eventually ACT UP splits. So it actually went in a
conservative direction, away from the universal healthcare model.

RF: Do you think the movement was an
example of intersectionality in action?

SS: We showed the film in Palestine, in
Abu Dhabi, in other Arab countries. In the scene where ACT UP is
taking over Grand Central Station and saying “Fight AIDS not
Arabs”, there was this “ohh!” from the audience, because what
other American movement was in allegiance and solidarity with Arabs
in 1991? Nobody.

The very broad politics of ACT UP, the
pro-Arab politics of ACT UP. None of it came from theory, zero. It
came from practical application. If you need to make social change
you will do certain things. If you don't really need it, you won't
do. If you're desperate to live, you do what you have to do to live.
You realise that it's only in coalition that you can get anywhere.

And
that's why when it came round to 2001 and nobody could remember ACT
UP or what they had done, I thought, “well this is a disaster”,
because ACT UP was the most effective recent political movement in
the United States. It's a part of gay liberation, it's a part of
women's liberation. It just was so successful, and the fact that
people had never heard of it was very disturbing.

Our film has shown that broad
coalitions of all different kinds of people using all different kinds
of circumstances working together is what creates social
transformation. It's actually activists. And if you want to create
transformation, that's a model that will help you.

Ray Filar is a freelance journalist and an editor at openDemocracy, working on the Transformation section. Their writing has been published in The Guardian, The Times, and the New Statesman, among others. They are the editor of Resist! Against a precarious future (Lawrence & Wishart, 2015), a book about young people and politics. They tweet, @rayfilar, their website is here.

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